Walmart

I had a strangeness at Walmart today. It was a myriad of experiences with a temporary worker, who challenges my brain function in a negative way. Otherwise she is a good carer. She asks questions we just are not quite compatible as my brain cannot function around her constant babble. First I learned that you can in fact make them go get more gluten free things, and while I waited for someone to do that I noticed the symbol of a purple heart on a hat. I turned to do my habitual thanking and spoke with the man for a moment. He was surprised and then smiled at me and said he had not expected thanks and it has been seventy years just about since he enlisted, to fight Hitler. He was proud of his service and he is in fact proud of what the people of this country have become, over all. Not our politicians but I have yet to meet even a politician who likes politicians. It was a surreal moment as I realized that he fought in a war so long ago that I only know one person who was alive then. His happiness with my gratidude and the smile were well worth my nervousness in pointing out I saw it. The purple-heart meaning he was injured meant it was more important that I thank him.

In my shopping I always cross paths with strange characters or people who just jump out at me visually. A woman in a beautiful sparkling sweater with a Hajib looked over the meats at the same moment. I complimented her sweater, her daughter translated and I thanked her daughter for that. They were surprised by this. I thought that this post would only entail at that moment my little moment of wonder at our aging warriors, as my brain tumbled over my wanting to share that I met a real hero. I was almost finished with my shopping, hunting down an elusive cheese (which I never did find) when the woman and her daughter returned and flagged me and my tempcarer down. They were in a panic because her ride home had vanished, they had only EBT and they were stranded. They needed help and this is where the Government housed them, as refugees from the Iraq war.

I had no expectation of this adventure and my tempcarer was surprised when I stopped to help them. They asked for a ride home which was impossible and a terrifying concept to me not because I am such a quarrelsome creature or my allergies but because this is something they have done before. So we made calls. We tried every option before calling of all places the Mormons that had given them their book. I even had to call the police. I felt terrible doing this. Then the girl mentioned her mother has qualified for a carer. I wrote down resources, and then we had to finish our shopping.

I felt guilt I could not help them and their relief that I helped was amazing. The gratitude. I talked to them both a while and they wanted to hug me, which I could not do for them but in the end they got a ride. Still it made me wonder how they got here, how they will adapt. What resources do people have. I literally just got home and am writing this and I do not know, but I wonder. I find it a horrifying thing they have no transport and I cannot imagine the fear they feel. What it must take to leave your entire culture behind. I found them brave, and yet desperate. It is their desperation that leaves me hoping I meet them again.

Walmart is always an adventure for me, I get overloaded between false alarm fire alarms, the people and shopping and yet this was more an adventure than the norm. I did get a bit of an allergic reaction but it was worth stopping my day to help people. My tempcarer is rushing right now to put all the things I got away. No toys even, I just stocked up on food. I feel a strange sorrow that I cannot do more, that I cannot know them more intimately but it is not an option at this time. So I will wonder and I can hope that we meet again. I gave them resources they did not know, and I see a young girl with many burdens and I wonder who she will become.

Normally I expect to bring home food, not questions about the shape of the universe and the scheme of things. Quite the load of shopping today!

Advocacy: Lets Help Amanda Baggs

Long ago when I first started this blog I received comments from several people. It startled me. THe idea people would read this blog. Then I had to put it away and found out people didn’t quit following. So with that in mind I am writing the first advocacy post in two years. A great deal of what I learned about advocacy I learned from Amanda Baggs. She was kind enough to email with me for a short period when I had just survived my exhusband and I found comfort in her words. I was able to keep going because I did not feel alone. I didn’t feel trapped by all the things in my mind or the way I see and think anymore. Amanda is one of the most powerful advocates I have met, not in the sense others see power but in her effect that I can see.

These links are PTSD trigger alerts. Simply put, Amanda has been tortured by the hospital that should have helped her and is being bullied into a dangerous and potentially deadly situation. Here are the links and they do include how you can help. Sharing this post or these links will also help.

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/no-anesthesia-for-disabled-woman.html

http://webmuskie.tumblr.com/ This tumblr has an entire series of documentation posts about the event. This is the first hand source of the info.

Please do what you can to help Amanda get her needs met and not be punished for the malpractice of her medical team. I am going to go curse into a corner and figure out how to make the calls around my brain tomorrow.

Update: I redid the links to the blogs, they should both be working now. I am not sure why they weren’t since the links are the exact same. If issues persist please let me know.

 

What the Hell! (Trigger Warning)

Today’s trigger warning is brought to you by abusive caregivers! Today I did not want to wake up. Sprite insisted, and in her special way got me upright, into pre-shower jammies. I always put on clean pajamas before I shower, so that I can then put on clean clothes. It feels good this way. So I put on my red satin jammies. I feel like a movie star with this on. I did the morning ritual, pee, meds, considering food, rejecting that idea because it’s too early. I curled up and watched a cartoon on my computer.

It was so late and my internal clock went “Ding, caregiver is late.” I looked at the clock, she wasn’t just a little late. She was a half an hour late. So I called the office. They normally call if someone calls in, and I requested that they make sure she knows, she calls them BEFORE she is late. They called me back, they gave her a formal warning. This is your job on the line, if you don’t call in next time you get fired.

I don’t have to hear the excuses for why people are late now. I try to not be late, it makes me panic to be late. I do not hold others to the same terror of lateness that I experience. I opened the blanket so I could watch the sky, still planning to shower. This would be three whole days not a week… twice in a row! Improvement. The office and I were on the phone when she walked up, so I told them she was here. Simple. Easy.

She starts giving me the excuses and I cut her off. “I don’t want to hear them. I don’t need to either. Lets just get the work done.” Maybe I said it wrong? I know better than that but she argued about feeding the cat, about feeding me. I pointed out she was over an hour and a half late, and since she never called I couldn’t compensate for that. I have to know she is going to be that late when I am in motion or it’s too late. I save moving sometimes or will save movement energy if I need to. I also tell her that we will be mopping tomorrow…

She storms off, then I hear crashing. I smell bad fumes. I was eating. We don’t clean when I eat because the smells can make me queasy even on the approved stuff. I choke down my food, more crashing. She’s throwing things. I hear water splashing on the floor. She never went out for a broom. My questing mind won’t let it go. I am afraid. Sprite is afraid., Sprite.. afraid? My indicator of when I should be afraid is screaming in terror and is trying to find a safe place to hide.

I stopped doubting myself, and considering my options. I had to look to see what was going on. I used movement energy, I got upright and moved to my room, I paused in the door way, my knees were dislocating so I relocated them. The cracking made her look up. My bathroom was thrashed. No amount of cleaning makes THAT kind of mess. I grabbed my ebook reader, and then went outside. My energy is spent, I am afraid. How do I keep going? My brain stalls a moment. What do I do?

I lean on my fence, letting it hold me up. Today was thankfully good on the ability. So rare are these days when I can move this far without falling. I did not fall. I creep out of my gate when I realize she could see me. I hold my mace at the ready. I am vulnerable, the sun is burning my skin. My neighbors look up. They are gathered as they tend to be and they notice me. I rarely commune with them, but when I do go out I am never in disarray. My hair is always brushed, my feet always shoed. Shoed is a word? If not it is now. I am never in my pajamas. I am never without my scooter.

The agency and I talk, I explain what is happening. I am put on hold and transferred to the man who runs the agency. Robert is a tall black man, he used to play football, and he has always felt safe to me. He has a nice smile, and always seems to understand, even when my brain is tied between pain and panick. I get the words out, “I need you to come remove my caregiver, and get the keys. She can’t be here now.” I explain what I saw and that Sprite is also afraid. I also tell him I am pretending to call my mother, she has no idea I have done this because I am afraid.

He got here in five minutes. I had just made it in, the door left unlocked. The window is still open. Jo has moved to the kitchen, supposedly the bathroom is fixed. I haven’t looked yet. She is smearing the broom around in soapy water. No mop. She doesn’t grab the mop until Robert is here. My knight in shining armor. Damned damsel in distress. I hate needing a rescue. I signal for him to enter when I see him. He steps over the puddle that is my entry way, and her mood shifts. She stops glaring at me when she sees him there, and grabs the mop. We let her finish “mopping” though my floor has brown streaks in it now. It’s dirtier. Cat poop litter streaks? That’s the level of ick that is in the bathroom. That is why I keep the germs seperate. Different broom, different mop. My kitchen floor is coated in grime. It scares me.

He didn’t tell her I called. I didn’t have to talk until I was ready. Robert noted Sprite, still screaming. She calmed some when he entered. Sprite likes him too. She moves and sits beside him. She keeps growling and muttering at Jo. I get the keys back. Robert and I talk. “You should never be afraid of your caregiver. You did the right thing.” I explain, sometimes I am afraid of everything and everyone and I can’t always tell if it is reasonable fear. Sprite tells me. He points out that Sprite calmed down the moment the door closed behind her.

Sprite is asleep. I have been calling people. I was on the phone with someone, I also got a few calls while in the moment of mess. I also texted two people before I realized it wasn’t PTSD and autistic overload. My body hurts. My body doesn’t just hurt but my mind too. The switch between calm and rage was so sudden. I flashed back. My terror was real for the moment. It wasn’t too much it just was. The agency respects me as a person and knew.

I called my mother, and told her that I had to use her as an excuse. She pointed out people DO argue with their parents, so it was a good excuse and to use it again if I have to. We talked. There was no anger. There was no fear. I talked to My Beth, my sweet sister. She asked why I was so out of it. I told her, we talked about the mundane. My Beth is almost an adult now. I know I should not call her mine but she is mine in a way. My memories. My sister. My Beth. She was tired, and yet she made sure to talk to me a bit. We didn’t talk too long, they are moving cars today so she had to go help winch something. My mom called back after they were done winching. She was glad I trusted her enough to use the excuse.

The reason that is trust is, my caregivers before who were not giving care but abuse have called to verify my excuses. I am also afraid of using an excuse with someone who could be hurt. It takes trust to let someone be your excuse. It takes trust. I am trying. She is trying.

Still… what the hell happened? I can’t follow the line in mind. A half an hour of abuse happened. The why escapes me as it always does. I can handle the cursing, I can handle someone being mad. I cannot handle the flinging of things. I have to pee now so I will see how bad the bathroom is. The floors should be dry now. It’s been an hour. Right now Jo is finding out she no longer works for the agency.

I am always afraid that I will be told I cannot have a caregiver again when this happens. I already know I have a temporary person coming in and that the agency doesn’t hold this against me. They hold this sort of action against the caregiver. I am known to be a rather laid back person (on the outside, my head is not so laid back as you my readers know). I tend to roll with the little challenges, I try to work things out.

“You should never be afraid of your caregiver.” I am going to try and remember that. My little fear and trepidation, I will try to let them go. I am not afraid of anyone at the agency, my neighbors, and I am working on my fear of my mother. I felt safer outside of my house today. Maybe this is in and of itself a form of progress?

When Life is a Trigger Warning (Trigger Warning)

I wrote over 7000 words and WordPress ate it. I’ll try again later. I am really really not okay with this turn of events.

Hidden Abuse Take Two (Trigger Warning)

Abuse is something that is running rampant in our society. I think the “right” to abuse is not just reinforced in some religions, but it is reinforced in other ways. The media often shows women getting hit as punishment, or if male and females are both under assault, the woman gets hurt worse, and it is the man’s duty to avenge her. There are very few deviations from this formula. I am writing a deviation, at least I hope so, for my own novel. I realized that I am exploring what it is to be a survivor in my writing.

I am not going to give the plot away by much, but, there is an exploration of rape, incest, and the confrontation of an abuser in my story. That is a big portion of it’s core. This is a core part of what has made me who I am. I have confronted every abuser in my life, and although it is extremely painful and has ended badly in most circumstance, I was able to show them that I know what they are.

Through this exploration of what abuse is, and my constant thoughts and warnings I have come to see that the media lies. Abuse isn’t just when you are beaten bloody. That is the most obvious abuse. That is the abuse that comes in at the end of a very long escalation. Abuse starts small.

My first abusive boyfriend actually helped me find my name. At times I feel weird answering to Kat, because he was the first to call me that. The spelling and intention is different yet the association sometimes pops up. The abuse with him was the smallest. It started over food. I have huge food issues, and have had for most of my life. He would start out with our food order. I would order something meaty and he’d look at me and say, “That will make your cholesterol high. Don’t you want a salad?” If I refused to order the salad, at first he would just shrug, but then the comments started to escalate, “Well, if you want to be a fat pig for the rest of your life fine…”

I nearly died when I started to give in. I didn’t see this as abuse. It was not as bad as what I had dealt with before, so how could it be abuse? I didn’t understand. He then began to accuse me of things, little things that made no sense to me. “You are one of the Illuminati, You are the destroyer of worlds.” I thought he’d been reading way too many comic books. He hated them but read them to try and make me feel better about him, in some ways that worked at first.

This was one of my longest relationships, I was hiding my relationship from my family per his order. After all they would surely judge me for dating a person of a different ethnicity. Before you ask, no he was not black. I have been blessed to know only gentle men of color. No single ethnic group holds the buy out on violence. Most of my abusers are men of my own color, white.

I began to miss out on time with my friends. He then started pressuring me for sex. I had decided a long time ago I want to have sex with the man I marry. For some reason this was not the same in my mind with women, I could explore them but men were too dangerous and in my mind hated pleasure with promiscuous women. I was warned that if I did not have sex with him, the world would end.

The night we broke up he hit me. I do not remember much, I had a flash back to one of the worst beatings of my life. I also reacted, I don’t remember it but when I came back to reality I had been hitting him with a frying pan. My face hurt, and he snarled at me, “I am going to rape you, kill you, and then I will have your soul forever.” Those words haunt me. He meant them. He wanted to steal my soul, because in his eyes I had too much personal power.

I called 911, he was arrested, and some of the things I found out about him were frightening. He had lied about his name, he had lied about a lot of things. He was a known serial rapist, and had killed more than one person. He went to jail, and although he is out now my fear of him is very small. I doubt he will try to find me. If he does, I know how to protect myself, and I will call the police.

Looking back, I see many warning signs of abuse. I thought these were normal for social interactions however. Any time you are not allowed to share a relationship, it is a warning sign of abuse. If you are not able to meet their friends or family, that is another sign of abuse. It is a bit harder to feel that these are significant with internet dating, but they are in the majority of cases. If you must stop seeing your friends, it is a warning sign of abuse. If you say no, and he takes that as yes? Get out of there.

There are more signs to abuse, but my brain is trying to flash back now, so I need to stop writing this piece. Abuse is not as hidden as it thinks it is. As a survivor of abuse I have dealt with varying layers, finding each time my brain accepts it as normal, until I finally found my way out of the cycle of abuse. It takes years, it takes practice. If anything hurts you, even if it might not feel wrong it is abuse.

Calling all Politicians

Sometimes you have to pick up the phone and call people. I personally hate telephones. I barely can hear the people on the other end, there is this whine, and not being able to see their faces makes me nervous. What if I cannot hear them? I hate the constant what what whating. It makes me feel inept.

My Person found me a speaker phone, as our cheap little workable phone doesn’t have one, and I was not answer any calls. I just shut down the communications line and went lalalala when the phone rang. I would of course call back if someone left a voice mail, eventually. Some people are important enough to endure the evil phone for. Myself included.

This morning I decided to call my Senators and Congressman to find out what their opinions on Non dog Service animals are. I also shared my need for my cat. This is in response to Obama giving more time before the vote being cast on the DOJ’s pending ADA regulations that would ban the use of any species other than dogs as service animals. The exact regulation in question is “Title III Regulation 28 CFR Part 36: Nondiscrimination on the Basis of Disability by Public Accommodations and in Commercial Facilities.

This is the very regulation that lead to a comments threat and began my Blogging. The first call was the hardest. I dialed the long distance number to Washington, waited for the phone to ring. Instead of a ring a voice came out, “Martin Heinreich’s office.” I froze, then Toastmaster’s instinct took over. After explaining my call I was given a number that would get me faster results. Calling that, I had a conversation with a young man, who is likely older than I am, and educated him on why this law is discriminatory. He became excited, and impassioned. He told me he will fight for me and others with nondog service animals. I found this video at anotherĀ  blog. The big event showing her stupidity is at 8:40. At that point you are likely to lose any respect you had for this woman.

I do admit some regulation needs to be made with in the service animal laws to protect service animal users from the Fakers such as Rosie O’Donnell destroying the little respect we service animal users get. I am lucky that most people when protesting my use of a service animal hesitate on the grounds of never seeing a cat who is well trained or can handle the duties and tasks given, but, mine is almost always on her best behavior.

All service animals have bad days. Usually Sprite gets one day off a week. Her first day out after her month of serious illness was a hard day, but, she behaved admirably. Indeed, when I started my phone calls both she and Mr.Shakespurr came and listened. Sprite, upon hearing one of the aides to the second senator protest her existence tried to hang up the phone. I barely caught her paw. I explained her, in terms they could understand. “I can’t bend or walk. I use a wheelchair. She can be an extra long arm for me, or if I drop something, I do not have to wait for someone else to get it. She returned my life and independence to me.” I think the last sentence had the biggest impact.

Six phone calls for three politicians later and I feel good. I am going to help them understand that not all dogs make good service animals and some people need alternatives. I used the phrases, “It is discrimination to vote for this bill, what about those of us with serious allergies to dogs? Should we be further handicapped by this?” Most of the workers held passion. They reflected my own zeal and none of them treated me as if I was not important.

I also called the Mayor’s office and for once found someone who was intelligent and understanding about my call. He made a promise last year to train the local police on how to handle an ADA disturbance. I am often reported to the police as if my rights are a crime, and am tired of their enforcing the negative behavior. I am no criminal, I just want to buy groceries and live a normal life. I am now waiting on the return call, there is an assigned person, responsible for this. This is progress.

The added joy, a rarity with any form of politics and telephones, either alone or together, is the joy of telling someone. “Hang on, I am talking with my Senator.” It isn’t getting to say that which causes the joy, it is the discussion that follows after the call about why I am calling a politician. Why is it important to advocate for my rights? To make my voice heard? Because, if I do not speak up, no one else will speak for me.

The Doom Ship

Not everyone gets to ride the Doomship. I ride, others ride, and yet I often take it for granted. What is the Doomship you ask? The Doomship is the Ship of Life, riding towards the birthday of Death. It sounds horribly dramatic and is.

Children born with serious illness are often told, “You won’t live to be 21,” Or something similar. I have a list of birthdays that have passed, my next is another Doom Birthday. When I broke my back, and it was first diagnosed I had a series of doctors tell me that my organs would fail by 25. My birthday isn’t for a few months, I was reading blogs off of the Disabled Blog Carnival and started reading Temporarily Disabled. Not only is this a great read, though with each post I tend to cry just a little for the child who was aching and the pain she has been through. She turned 26 and posted about the Doomship, sailing past into the great unknown.

With Doomship Birthdays past, it is like looking at a precipice of great unknown. I know I am going to live past 25. I am confident only due to surviving so long. These waters are familiar. I am pensive too, due to my Annual Cancer Scare. I get one a year. This time it is my reproductive system. I had my annual blood work done and my white count is high. My pap came back with abnormal cells. We’re redoing them both to verify before any panicking is done.

I waited three years before getting a pap, because no doctor would accommodate my need to not be in their perfect position, or to even help me balance on the table. I can’t do it myself. I need someone else to help heft my carcass around. I know if I do have cancer I won’t die. I will just get over it. My doctor is more worried than I am.

Right now I am surrounded by everything I have ever wanted. Not the things like the toys I never had, but the love I most desired. On my right I have Sprite, the service cat, curled up and purring against my back. She is helping me to not spasm so I can type the words out. My body is rebelling. I have on my left William drooling into my shirt, and every so often poking the keyboard with a paw to see what is so fascinating. He sleeps, then paws then sleeps a bit more.

In the other room my Person is puttering around, doing the dishes after making a meal of my choice. I had spaghetti with sausage meatballs. I haven’t had meatballs in a long time, but he made them for me, tolerating my lewd jokes. My home is clean, my bed is comfortable. My friends and family are far enough away and close enough at the same time. I even have high speed internet to keep me amused on those days when movement is unacceptable.

The Doomship sails on, the waves splash, the thunder crashes, and my life flashes before my eyes, but, it is the life I am living that I am proud of. Not the memories, not the past. It is my future that holds me in it’s sway. I reach for it, sitting in the prow, praying to my gods, listening to the world, and taking part in changing it.

I write something every day, and each time it is self discovery. I discovered I can write non fiction. I never knew I could. I know the mechanics of writing are sound, as I sell fiction periodically, and write it almost daily. It is merely the fear of my life that has held me back. I feared upsetting those with the power over my life and death. I am now the Captain of my Doomship. I mutinied.

So, as I rest, my ship swaying, I look out and see that everyone else is in a Doomship too, they just do not know it. They do not prepare, they do not adapt. They aren’t aware that they have to. Red sky in morning sailor take warning, the storm is coming and the night is humming… wait not for the red sky at night, for on the Doomship there is no Sailor’s Delight.

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